Chondrosarcoma – ah shit, bob's sick

Monday treatments are done with … and none the too soon either. What a strange start to the week. I headed out for Boston a little earlier then usual because I needed to stop at the Auto Dealer and get the Toyota it’s eight thousand mile check up. Besides that the “routine maintenance” light was on and I didn’t want to chance driving it to Boston without having it checked out.

I was at the dealership for about twenty minutes, when they gave me the car back and said it was finished. Great … that left me a little extra time, and I could now take my time going to Boston.

As I got out on the highway going through New Hampshire the traffic started to build and slow down. I made it only about ten minutes before my appointment time … I thought I had at least a whole extra hour, plus … but it must’ve gotten lost in the traffic.

The proton center was running late when I got there. Trouble with the cyclotron caused me to wait an extra hour and a half. Mainly caused by being shut down for four days. Now, by the time I’m getting out of MGH and Boston, the rush hour traffic is built up and it’s pouring rain! … and I mean pouring.

It takes an hour and a half again, to get to Nahant (which is normally a twenty minute drive). Then, finally I get to the house, and my key won’t open the door … and it’s still pouring down rain. After trying to get the door open for like ten minutes and getting soaked and chilled to the bone, I decided to walk around the back and see if another door might be open. Yep, sure enough, I get in.

Actually, it was almost comical in a sense … a day totally gone awry. So, somehow it ended up taking me about ten hours, to get to Boston, get treated, and get to Nahant … whew, glad its not like that every week! Gotta keep that sense of humor going. I hate the cold rain.

All is calm and I’m warm and dry now J

Subject Change:

I want to thank Ms. McCruddy for her heart-felt email, and for following this blog. I wish her and hubby all the best. In the right-hand column I placed a link to her blog called, Off the Deep End: The Crud Chronicles. Another true, ongoing story (diagnosed in early November), about chondrosarcoma. Check her blog out.

You know, at least once a week, since I’ve started this blog, I get an email or phone call from someone that’s been touched by a life changing situation, like cancer or brain tumor or something. I find it amazing that so many people are using the internet to search out information and educate themselves, and sometimes their doctors, before making decisions. I think that’s great, because no doctor knows it all. I believe their intentions are well meaning … but there’s no way, they can know everything that can go wrong, in your body. It’s great to have a research tool

I’m proud of this blog for that very reason … it has helped many people find a realistic online experience and straight-forward information about proton therapy and chondrosarcoma. Because I’ll tell you, there isn’t much out there that actually useful.

Subject Change:

Sometime this week I hope to be finding out some information about what the near future holds for me. I have a few questions for Doc about when I’m actually going to be finished with not only treatments, but with the scans and tests afterwards … in other-words, when am I free?

I am in search of an oncologist in my area of Vermont, although I have doubts about finding one here. Our phone book doesn’t even list it as a category! Which leads me to believe that I’ll be searching through New Hampshire, New York, and Massachusetts for one too.

The idea behind the local oncologist, is to have someone close by that can communicate with Doc Delaney … simply saving me extra trips to Boston for scans later on.

For those that don’t know what an oncologist is: He/She is a physician with advanced training, experience and education that provides them with the skills necessary to examine, diagnose and manage or treat cancerous tumors.

Simple enough right? Yeah, sure. Not as simple as it sounds.

I forgot to ask Sher to take a few photo’s of my back so that you can see what 35 treatments with a proton beam looks like. If I can find someone at the hospital to do tomorrow, I’ll post them tomorrow.

This week the realization of having less mobility then I’ve had in the past, set in, and I’ve been working on solving this problem before it becomes an even bigger problem.

In general, most of us travel the same distances, the same places, and in the same ways, every week. For example, we stop at the gas station to fill up, we shop generally at the same stores, we go to work etc etc. Most of those things I’m still able to do in the same manner I always have. I have a walking cane to help if I need it.

But for medium distances of travel, still on foot, but longer, I have a problem. I can’t really walk much more then across a parking lot (tops) without getting tired and having to rest. No, I’m not out of breath … my leg simply runs out of energy and won’t freakin’ move. The muscles cramp, knee won’t bend, and I have to stop. So, if I want to take my son down to the bike path, or Sher to a shopping mall, or take the dog for a long walk, or even more common for me, to attend a protest or vigil … I can’t. I simply can’t make the distance walking. Well, not without driving anybody who’d with me, crazy by having to stop and rest every five minutes. So to solve this, I’ve gotten a wheelchair. This enables me to make those mid-range distances on my own, under my own power, in my own control.

The chair was given to me by a friend …yes, I could’ve have gotten one from the insurance company, and I still may do that if I find myself needing it more then I think I will, but for now, this is great. Alberic and I re-named the chair “Bentley” after a character in one of his video games, that uses a wheelchair. And of course he can’t wait to find some stickers and decorations for it. Bentley helps solve this mid-range distance of travel for me, just perfectly.

Of course, for long distance I have my car, which even though it’s standard shift. five speed, I can still drive for several hours at a time … so the travel problem is solved. It means I can get anywhere, any time, on my own … and yes, that means a damn lot, to my family and I.

OK … so I can get around, big deal. It is a big deal! Try it sometime … go somewhere you can use a wheelchair and try moving around through the stores and aisles, down sidewalks, etc. etc … you see, it’s a hell of a challenge if you’re not accustomed to it. It’ll give you a new found appreciation for what a disabled person goes through to do something, or get somewhere. Don’t just try it for a few minutes …. Try it for half an hour or so … see what your arm muscles feel like.

Here’s a pic of the current chair. If I find myself using it a lot, then I may order a nice custom chair .

And now, it’s time to get ready for another week in Boston!

Wow! … yes, today is my actual birthday, and what a birthday it was!. First off, I thank all of you for the birthday wishes. I’ve received more phone call, snail mail, email, facebook, skype, icq, text message, and every other kind of birthday wish you think of, then ever before. It’s been a great day, Al and Sher have been here, Kevin and Mike, and others that have dropped by. I thank you all.

We even had cake at 10:30am this morning!

We’ve also been listening to my buddy Ray’s – Streaming Oldies, Christmas Music stream, (what a great mix) which is totally free to do … just go visit StreamingOldies.com  and click on the link that says Christmas Stream!

For the first time in three months, I feel like I have enough time to relax and sit back a bit. You know every week when I race back to Vermont for the weekend and then race back to Boston for treatment, I never feel like I really get a rest … the time is simply too short. It’s been wonderful to spend a few hours this weekend … just thinking, and thinking clearly.

But to be straight with you … I don’t want to rest, that’s not what I’m looking for. I feel more compelled then ever to move forward, and to move fast, and begin accomplishing some of the things that I’ve always wanted to do.

Yes I’m disappointed in the amount of work I’ve been able to do while being treated, but I have to continue treatment and it must come first at the moment. But I don’t expect that to last forever. Someday, and someday soon, this’ll all be over, and my life will be returned to me, for however long is left on my clock … and believe me, this treatment has bought me some time. I don’t know how much, the Doc don’t know how much … but definitely some. Six moths, a year, five years? … who know, who cares? I’m here now.

You know, and I’m sure I’ve mentioned many times on this blog before, that when this cancer struck, I wasn’t finished with my life. Quite the opposite actually, I felt like I was just reaching some sort of plateau in life where finishing things was easier and faster then ever before. Programming came easier, art became easier, humor and all the other things that form my life, were coming easier then ever before.

Over the last few years I’d been able to multi-task better, cleaner and to a degree of satisfaction that I’ve never personally reached before. That’s what I hoping I can return to.

But one might ask …” well, what’s your prognosis, Bob” … I say “death in the end, just like yours” … and that’s totally true, death will stop us all in the end. So, having a solid prognosis allows me to return to work and continue in what ever direction I wish. And yep, I’m in a hurry.

There’s an old saying that says “the best way to kill time, is to work it to death”, well … isn’t that what we’re all doing? killing time, killing time until we die. Think about it.

I guess I could sit in a chair (killing time) and let the world go on around me, but that’s not what I’m choosing. I want to accomplish things and I have a ton of them that I haven’t gotten to do yet. I’ve had things stuck in my head for years, and I feel like they’re about to pour out suddenly and uncontrollably. I have more poems and songs to write, stories to tell, programs to program, art to create and lot’s and lot’s of work to do. I have several photography projects I’d like to do, a million people I’d like to interview and that’s just the beginning. No, I’m not ready to slow down, nor stop, nor die. Not yet. There’s just too much to do.

So hang in there (I tell myself), … in a few more short weeks, hopefully Iyou’ll be back and with the most energy I’ve ever had. With a few “adjustments” in life, you’re going to move forward and get out of this mess. That’s the plan.

Happy Thanksgiving to those that read this blog and recognize it as a holiday. Happily, I have only Wednesday’s treatment to go before heading back to Vermont for a four day span. It’ll be the longest I’ve been home for the past three months and it’s already starting to feel good.

Can’t wait to pop that Turkey in the oven and start to smell all those familiar scents of a classic Thanksgiving dinner. I’ve been accustomed to those smells for a full fifty-seven years. Sure, I always stuffed myself full of turkey on Thanksgiving Day, along with mashed potatoes, turnips, carrots, lot’s of stuffing and gravy, and let’s not forget all those pies and desserts! Yep, I was one of those that indulged to the maximum.

I make my turkey the same way my grandmother and mother did and have continued that tradition through my household too … Thanksgiving just isn’t the same without all of it.

But this year I’m thinking different, yes of course, I’m going to have my traditional Thanksgiving goodies … but honestly, it’s only because others have helped me, through a tough year … the toughest of my life and you damn well better know that I wouldn’t be enjoying this years festivities if weren’t for their help, your help … yep, you.

So what am I thankful for this year?

I’m thankful for those of you that have banded together and helped Sher, Alberic and I make it through the year. I’m thankful for all those supportive letters and emails that helped keep my spirits high. I’m thankful for the decision that both Sher and I made, to go with Proton Therapy instead of the traditional surgery.

I’m thankful for ARIS (and all whom work there) for helping keep us afloat during these last months, and to Teri and Herb M. for supplying me with a wonderfully comfortable place to live.

I’m thankful for all those personal friends that understood my sense of humor and continued to make me laugh, even though most of the time I felt like crying.

I’m thankful for all the doctors, nurses, technicians and healthcare workers that have relentlessly worked on me. Not just at Massachusetts General, but also Dartmouth Hitchcock, Springfield Hospital, Francis Burr and the Cox Center. Let me tell you, I went through some doctors this year.

For all of Scifillian’s clients that have patiently waited for updates and business applications while I been being treated. I’m thankful for all those that have ordered new work to be done and helping to keep our business going.

Just look at the list in the right hand column and you’ll see a lot of them … and I have a ton more to add. This … this is the spirit of people helping people, that makes it a Thanksgiving to me.

I’m thankful for my doctors … no really. I know they’re getting paid for their work … but Doc D. didn’t ‘have’ to take a weird case like mine on. But he did, and I thank him.

Today, as I turned the corner of Cambridge on to Grove, I saw Larry out in the street with both walking canes and his sign hung around his neck, standing in the cold wind. I pass Larry every day, his hand-written sign reads “My name is Larry, I have MS, can’t work, help”. Usually I pass these guys up … but Larry really does have MS, he shakes like a leaf as he waits for donations from drivers and walkers that pass by.

I’ve spoken with Larry many times while I’ve waited for the light to change, he’s a kind and gentle man, he simply can’t work, and has no other option in life but to beg for a living. He’s lost everything … except hope and thankfulness that he’s alive.

As I often do, I reached in my pocket and handed him a few bucks out of the window of my warm car, and as he always does, he replied, “thank you” … but this time I replied back again said “no Larry, thank you my friend”. He looked at the Disabled stickers on my car, and the walking cane I keep between the front seats, and reached in his pocket and took out more money then I had handed him … and offered it to me! My eyes swelled with tears, and the light changed, and cars started to honk … I had to leave.

Yes, I’m thankful for Larry too. Larry’s offer to hand me more then I handed him tells me that no matter how tough you think you have it … there is always someone worse off and in need of help … now that’s Thanksgiving spirit.

But of all this stuff, do you know what I’m most thankful for this year?
Simply being here to enjoy it …. Thank you all.